Echoes

Echoes
by Twinkle VanFleet

She doesn’t mind taking the fall for you,
Just let her know what she’s taking it for,
So that when she’s confronted,
The blanket protects you more.

 

She doesn’t mind catching the shame,
To save your lovely face,
Just don’t let it come to her from the flip side,
Where she has no saving grace.

 

All it takes is one betrayal, my friends,
To remind us why we guard our heart
One deception, cost 10 loyalties
Be mindful in the choices that alter the dynamic art.

 

Be conscious that when it changes,
It’s never the same again,
Be cautious of the slips,
That penetrate like acid rain.

 

But know through each forgiveness,
Comes a new sense of owing,
Everything has a season,
Human nature keeps growing.

 

She knew from the beginning,
It would be part of the path,
To become wedged in circumstance,
And reap another’s wrath.

 

She knows there’s a bigger plan,
That sometimes ends in backfire,
Dangling between wonder and misconception,
So that you might acquire.

 

As we each make it through the storms of battle
She hopes there’s still some splendor,
In the fire once glowing splendiferously,
Which dimmed to a smoldering ember.

©2015 Twinkle Wood-VanFleet  All Rights Reserved.
Copyright Laws and Regulations of the United States  http://www.copyright.gov/title17/

 

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World Autoimmune Arthritis Day 2015 | Review

The World Autoimmune Arthritis Day was a 6 day long education and awareness event. Beginning May 15th and ending the 21st of May, 2015. Prior to the event beginning one of our board members lost her son from irreversible injuries and damage from a car accident. Barby’s dad was hospitalized and her mom passed away so when the race started she was still laying her mom to rest. The day before the race ended my mom was rushed to emergency surgery to have a pacemaker implanted. Another Board Member was hospitalized 2 days before the event ended and we’re thankful for all she put in before that. As a team we pulled through. All of us everywhere work through our pain and struggles. I commend you all for leading, teaching, raising awareness and educating. Thank you!

I enjoyed attending The Frustrating World of Autoimmune Arthritis Webinar presentation hosted by the (IFAA) International Foundation for Autoimmune Arthritis co-founders, Tiffany Westrich-Robertson, Tami Caskey Brown, and Kelly Conway, I found it educational regarding access to care, medication management and diagnosis. I took another detour with WE GOT AWARENESS!  SELF-ADVOCACY IN THE MODERN DAY presented by WEGO Health who I’ve advocated for as able over the years. WAAD15 was a great distraction for all that we had going on in our lives. Everyone having fun to raise awareness for Autoimmune Arthritis and even learn about other non profits.


Our Cheerleader for life!


World Autoimmune Arthritis Day sources and resources

World Autoimmune Arthritis Day Home http://www.worldautoimmunearthritisday.org/

Autoimmune Arthritis Info http://www.worldautoimmunearthritisday.org/autoimmune-arthritis.html

News and Multimedia http://www.worldautoimmunearthritisday.org/news—multimedia2.html

Meet the Non Profit Race Teams http://www.worldautoimmunearthritisday.org/meet-the-nonprofit-race-teams.html

About WAAD http://www.worldautoimmunearthritisday.org/about.html

Detours http://www.worldautoimmunearthritisday.org/detours.html

There were 5 Detours to attend, a recording is now included.

The Pit Crew http://www.worldautoimmunearthritisday.org/-pit-crew-.html

Where you could submit the names of your favorite community leaders to be included on a global map of resources.

Patient Suggested Practitioners: Rheumatologists, Immunologists, Dentists, Hospitals & More http://www.worldautoimmunearthritisday.org/patient-suggested-practitioners.html

Where you could submit the names of healthcare providers to be included in a global map for patient resources.

Resource Kiosk/Community Supporter’s http://www.worldautoimmunearthritisday.org/page2.html

The Kiosk included-

The American College of Rheumatolgy http://www.rheumatology.org/default.aspx

The European League Against Rheumatism (EULAR) http://www.eular.org/

WEGO Health  https://www.wegohealth.com/

National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov


AND THE WINNER IS….

Power of Pain Foundation!

Coming into the home stretch it was clear 3 teams were going to take 1-2-3, but which order? Throughout the race they continued to pass each other, and it came down to who submitted the most selfies and videos, which continued to pour in until the deadline from POPF’s entire staff and Board Members!

The final tallies were as follows:

Your Top 10
1. Power of Pain Foundation 3,903 mileage points
2. National Rheumatoid Arthritis Society 3,768 mileage points
3. Relapsing Polychondritis Awareness and Support Foundation Inc. 3,394 mileage points
4. International Foundation for Autoimmune Arthritis (IFAA) 2,332 mileage points
5. Sjögren’s Syndrome Foundation 1,736 mileage points

6. American Autoimmune Related Diseases Association (AARDA)
7. US Pain Foundation
8. International Still’s Disease Foundation
9. Spondylitis Association of America
10. Lupus UK

Thank you to the remaining Nonprofit Teams as well. Without your resources and participation this event could not have been possible:

National Ankylosing Spondylitis Society
Creaky Joints/Global Healthy Living Foundation
Arthritis National Research Foundation
National Psoriasis Foundation
International Federation of Psoriasis Associations
National Data Bank for Rheumatic Diseases
Arthritis Consumer Experts/Joint Health
Raynaud’s and Scleroderma Association
Canadian Spondylitis Association
Patient Advocate Foundation
Lupus Europe
Arthritis New Zealand
Vasculitis Foundation

We’d also like to thank our Sponsors, Celgene, Pfizer Pharmaceutical, andGenentech. Additionallly the International Foundation for Autoimmune Arthritis and WAAD15 Volunteers who ran and organized the event. And to all of you for attending, thank you!

Via ‪#‎WAAD15‬

World Autoimmune Arthritis Day

https://www.facebook.com/WorldAutoimmuneArthritisDay

You can still follow all the happenings as they occurred.


For your review and education, I’ve compiled each participants website link, so that you can continue to learn and share throughout the year. I hope you find each of the following helpful and useful.

American Autoimmune Related Diseases Association, Inc (AARDA) http://www.aarda.org/

Arthritis National Research Foundation http://www.curearthritis.org/

Arthritis New Zealand http://www.arthritis.org.nz/

Canadian Spondylitis Association http://www.spondylitis.ca/

Creaky Joints https://www.creakyjoints.org/

International Federation of Psoriasis Associations http://www.ifpa-pso.org/

International Foundation for Autoimmune Arthritis (IFAA) http://www.ifautoimmunearthritis.org/

International Still’s Disease Foundation, Inc www.stillsdisease.org

Joint Health http://www.jointhealth.org/home.cfm

Lupus Europe http://www.lupus-europe.org/

Lupus UK http://www.lupusuk.org.uk/

National Ankylosing Spondylitis (NAAS) Society http://nass.co.uk/

National Data Bank for Rheumatic Diseases https://www.arthritis-research.org/

National Psoriasis Foundation www.psoriasis.org

National Rheumatoid Arthritis Society http://www.nras.org.uk/

Patient Advocate Foundation www.patientadvocate.org

Power of Pain Foundation www.powerofpain.org

Raynaud’s and Scleroderma Association http://www.raynauds.org.uk/

Relapsing Polychondritis Awareness and Support Foundation http://www.polychondritis.org/

Sjögren’s Syndrome Foundation(SSF) http://www.sjogrens.org/home/

Spondylitis Association of America http://www.spondylitis.org/

U.S. Pain Foundation www.uspainfoundation.org

Vasculitis Foundation http://www.vasculitisfoundation.org/


And finally, I raised my glass, #RaiseYourGlass with nothing inside it, but spirit and hope.

#WAAD15#RaiseYourGlass#TeamPowerofPainFoundation_TwinkleVanFleet1

You can find World Autoimmune Arthritis Day on Twitter- https://twitter.com/WAutoimmuneAD

Looking forward to next year, I hope you are, too.

~Twinkle V.

Mom

MyMom and I_my25th_1

Mom
By Twinkle VanFleet

You Were The Arms That Held Me,
When Dreaming Kept Me Awake-

You Were The One Who Stood Beside Me,
When Growing Up Was Hard To Take.

You Were The One Who Encouraged Me,
To Be All I Could Be-

Sometimes, I Gave Up,
But Still, You Were There For Me.

And When You Thought You Had Failed,
I Was By Your Side-

Knowing There Are Many Choices,
You Chose One And Tried.

Thanks For Being My Friend,
You Are What All Moms Should Be-

I Love You, Mom,

Because Through It All-
You Were Loving Me.

©1995-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Written in my teens. First published online in 1995.

Mom was available in the Spring 1998 edition Of “Poetic Voices Of America” by the then Sparrowgrass Poetry Forum.

ISBN:0923242570

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2015 Nomination’s Open for the McDowell Advocacy Award | Power of Pain Foundation

The Power of Pain Foundation presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions.  Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance.

Nominations accepted between April 1 and June 30, 2015

More information and to make your nomination’s

visit McDowell Advocacy Award | Power of Pain Foundation.

Past Recipients

2014 – Dominick Spatafora

Mr. Dominick Spatafora is the 2014 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of his outstanding work and advocacy for people in pain. Mr. Spatafora’s awareness contributions to the neuropathy and chronic pain communities are outstanding. Mr. Spatafora is the president of the Neuropathy Action Foundation (NAF). Dominick founded the Neuropathy Action Foundation because of his commitment to educate the public on what neuropathy is and most importantly to help other neuropathy patients obtain and maintain appropriate individualized care. Dominick is a healthcare consultant and an expert in healthcare administration. He used this knowledge to create advocacy. The NAF which he founded in 2006 which focuses on awareness, education and empowerment. He brings together advocates and patients in legislative days, educational conferences, and news conferences to raise the awareness of the challenges of getting proper care including infusion therapy.

2013 – Paula Abdul

Ms. Paula Abdul is the 2013 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of her outstanding work and advocacy for people in pain. Ms Abdul’s awareness contributions to the reflex sympathetic dystrophy, lupus, neuro-muscular dystrophy, and chronic pain communities are outstanding. Ms Abdul has participated in television and print interviews sharing her personal story of living with reflex sympathetic dystrophy. She is actively engaged in social media helping to shine a spotlight on improving the quality of life, offer a chance for rehabilitation, decrease the sense of isolation and alienation, and increase the hope our pain population experiences.

2012 – Trudy Thomas

The 2011 McDowell Chronic Pain Advocacy Award is being presented to Trudy Thomas, host of Living with Hope. Trudy demonstrates all of the qualities we are looking for in awarding this honor. Thank you to Trudy for all she does for the RSD and Pain Community.

2011 – Barby Ingle

Barby has been battling a Neurological condition for over 11 years now. Reflex Sympathetic Dystrophy, is a progress Neuro-Autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that you can be yours. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. I had to become the Chief of Staff of my Own Medical Team. If I can do it, anyone can.

2010 – Mary French, RN

Mary French, RN, MSW, LCSW-C is the 2009 recipient of The Power of Pain Foundation’s 2009 McDowell Pain Advocacy Award in recognition of her outstanding work and advocacy for pain patients. The award was presented to Mary on September 12th at the 3rd Annual Comic Pain Relief held at George Mason University Center for the Arts in Fairfax, Virginia. Barby Ingle, Executive Director, said, “The motivation and drive you offer pain patients helps to keep others on track with goals and positivity as they deal with chronic pain issues.”

2009 – Mackenzie Bearup

Ms. Bearup is a 16 year old Reflex Sympathetic Dystrophy (RSD) patient who used her experience and love of reading to help others in pain. She started a book collection at Murphy-Harpst Children’s Center in Cedartown, NJ for their new library. Mackenzie knew that she was helped through her pain by reading books and thought that she could help other children who are going through unbearable pain of their own. She set out to collect 300 books for this local children’s center and in 2009 turned this project into a non-profit charity, Sheltering Books. Since she began just a few years ago she has collected 38,000 books.

2008 – Dale Lehn

“If you have chronic pain, after talking to clinical people all the time, the issues seem to go on and on…you feel you are always explaining yourself. But if you talk to someone else with chronic pain there’s an immediate recognition, a correlation, a knowing that you’re talking at a level you both understand. For people who have chronic pain every day of their lives, like I do, it’s really freeing to speak with someone you don’t have to explain everything to—someone who already knows exactly where you’re coming from. The people I work with also become honest with others about their pain. In dealing with pain, like dealing with alcoholism, shame often plays a big part of who you are because you are not happy, joyous, and free. Many times, people in pain will not be honest with their doctors and loved-ones. But when I work with people, sometimes they’ll say, ‘I’m doing fine.’ When I ask them, ‘Is that really how you feel,’ they usually laugh and say, ‘No, this is what’s going on….’ I encourage them to be that open and forthcoming with others.” – Dale Lehn, Founder of Chronic Pain Anonymous in 2004.

2007 -In memory of Melanie McDowell

Melanie McDowell

Melanie was an RSD patient and advocate from 1994 to 2006 when she passed away. Her biggest hope was that other patients would get timely and proper care. She was involved in many RSD awareness projects to promote better care for those with RSD and other chronic pain conditions. In her Memory POPF carries on the work that she was so passionate about.

 

Power of Pain Foundation recognizes the value of every person who makes up the pain community. We are guided by our commitment to excellence, leadership and patient empowerment. We demonstrate this by:

* Providing educational resources for physical and emotional care

* Advancing excellence in awareness of the over 150 conditions involving chronic nerve pain and what patients are faced with on a daily basis

* Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our pain community

* Demonstrating social responsibility through the use of our resources. The commitment of volunteers, physicians, community partners and friends to our mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.

www.powerofpain.org

Advance Directives – End of Life Issues – California Medical Association

In California, Advance Health Care Directives are the legally recognized format for “living wills.” An Advance Health Care Directive enables individuals to make sure that their health care wishes are known in advance and considered if for any reason they are unable to speak for themselves. An advance directive also allows a patient to appoint a health care “agent” who will have legal authority to make health care decisions in the event that patient is incapacitated, or immediately upon appointment if the patient expressly grants such authority.

For more information, see CMA’s Advance Health Care Directive kits. The kits, available in English and Spanish, include legal forms and wallet identification cards, and answer many of the most frequently asked questions about these issues.

Frequently Asked Questions About Advance Directives

The following are answers to commonly asked questions about Advance Health Care Directives.

What is an Advance Health Care Directive?

An Advance Health Care Directive is the best way to make sure that your health care wishes are known and considered if for any reason you are unable to speak for yourself. Completing a form called an “Advance Health Care Directive” allows you, under California law, to do a number of things:

First, you may appoint another person to be your health care “agent.” This person (who may also be known as your “attorney-in-fact”) will have legal authority to make decisions about your medical care if you become unable to make these decisions for yourself. Although you are not required to appoint a health care agent, CMA recommends that you do so. Appointing a particular person as your health care agent ensures there will be someone you trust to actively participate in the decisions surrounding your health care.

Second, you may write down your health care wishes in the Advance Health Care Directive form, for example, a desire not to receive treatment that only prolongs the dying process if you are seriously ill. Your doctor and your agent must follow your lawful instructions within the limits of generally accepted health care standards. Third, an Advance Health Care Directive allows you to express your wishes about organ and tissue donation.

Is an Advance Health Care Directive different from a “living will”?

The Advance Health Care Directive is now the legally recognized format for a living will in California. It replaces the Natural Death Act Declaration. The Advance Health Care Directive allows you to do more than the traditional living will, which only states your desire not to receive life-sustaining treatment if you are terminally ill or permanently unconscious. An Advance Health Care Directive allows you to state your wishes about refusing or accepting life-sustaining treatment in any situation.

Unlike a living will, an Advance Health Care Directive also can be used to state your desires about your health care in any situation in which you are unable to make your own decisions, not just when you are in a coma or are terminally ill. In addition, an Advance Health Care Directive allows you to appoint someone you trust to speak for you when you are incapacitated.

You do not need a separate living will if you have already stated your wishes about life-sustaining treatment in an Advance Health Care Directive. The Advance Health Care Directive form in CMA’s Advance Health Care Directive Kit includes an optional living will statement that you can select if it reflects your desires.

Is an Advance Health Care Directive different from a “Durable Power of Attorney for Health Care”?

The Advance Health Care Directive has replaced the Durable Power of Attorney for Health Care (or “DPAHC”) as the legally recognized document for appointing a health care agent in California. The Advance Health Care Directive allows you to do more than a DPAHC. An Advance Health Care Directive permits you not only to appoint an agent, but to give instructions about your own health care. You can now do either or both of these things in the same document.

Additional questions, answers and kits –

via Advance Directives – End of Life Issues – California Medical Association.

Commentary-

If you haven’t already, I urge you to complete your directive. Your end of life choices will be honored and upheld. You have the opportunity to add additional wishes regarding your healthcare. Choose your agent(s) wisely. That person will uphold your hopes in the event you are incapacitated for any reason, short term, or long term. Your written word really is your living will.

You can also register your Directive with the Advance Health Care Directive Registry at: 

http://www.sos.ca.gov/registries/advance-health-care-directive-registry/

Please keep a hard copy in a safe place if you haven’t used the registry.

You may also want to consider:

Donate Life California

Mission Statement

“Donate Life California saves lives by inspiring people to sign up with the state organ, eye and tissue donor registry”. – See more at: http://donatelifecalifornia.org/

“One person can save eight lives and enhance 50 others through organ and tissue donation”.

I wish I…

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I wish I…
by Twinkle VanFleet

I wish I may, I wish I might, give my life for my baby tonight,
I wish I could, I wish I had, the extra strength, for another new fight.

I wish I did, I wish I didn’t, know what’s to come, end or begin,
I wish I won’t, I wish I will, learn and grow, through this again.

I wish I knew, I wish I didn’t, all that it takes, to keep going with it,
I wish I felt, I wish I wouldn’t, not my daughter, let me take this.

I wish I had it, I wish she didn’t, so she could thrive, without fears,
I wish we do, I wish we will, have much more, many new years

I wish I can, and I will, carry my baby through her hardest nights,
I wish I may, I wish I might, give my life for my little girl tonight.

©2015 Twinkle VanFleet All Rights Reserved.
Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Kharisma, Erik and I_2013

2 year ago

Dad, daughter,

My daughter and I (daughter, right)

Me, husband, daughter.

#StrongerThanPain

 

To be continued…